Your daughter is sick. The doctors will tell you next month that in about three or four months, she will be much better. That’s not true. In July, when all of the tests have come back, they will tell you the truth: her gut and immune system are trashed, it’s way worse than expected, and they have no idea when she’s going to get better. They will also tell you to hold on to the fact that her hair is not falling out, her skin is not rashy, and she isn’t vomiting (though you will see some vomit, so be prepared). It will sound lame, but celebrate all those previously mentioned positives. It’s all you’re going to have for a while.
In a year, your whole family is going to be living on fruits, veggies, and lean protein with a few “treats” thrown in. You’re all going to be healthier than you’ve ever been before, but it’s going to be hell on earth getting there. Here are some tips and some information to help you get through the next twelve months:
Get as close to God as possible. Seriously, ask Him to come to your kitchen (that’s where you live now) and hold your hand. He’s in your heart, so start focusing on Him. If you live the next year basing your moods on what Wren plops in the toilet, your life is going to start looking exactly like what you’re basing it on. And even if it is what Dennis calls a perfect 10-boiyant, firm, and brown-it’s still crap. Focus on Christ.
Guilt is not productive. You will never stop feeling guilty about the fact that Wren was starving before your eyes. You’ll never really stop feeling bad about listening to the doctor who told you twice that everything was fine. You’ll never stop thinking that if you had been less distracted, less tired, and just a better mom that things might not have gotten so bad. You’re going to have to figure out a way to compartmentalize these feelings because you are about to have so much more to deal with.
Food labeling laws in the US are an excuse to slowly kill us so food-or more accurately, chemical-manufacturers can make money. Trust no one. Make your own tomato paste. Be okay with the fact that it takes six hours. Yeah, I’m serious.
There will be people who will help you and your kids and people who think they’re helping you but are making your life harder and intentionally choose to endanger your kids. Know who is who so if you and Dennis die together, your child will not end up eating goldfish crackers at your funeral. Other than that, let the helpers help and the haters hate and move on. You don’t have time for this either.
Tons of resources exist; take time to study them. This may require time outside of the house for a few hours to organize, read, and study without someone nursing or demanding avocados. Taking those few hours does not make you a neglectful mother; it makes you sane.
Don’t isolate yourselves. It will be tempting since every animal cracker crumb poses a dire risk to your daughter, but in the end it’s not a good idea. Learn to manage at social events within the limits you have, and try to relax. If you tell Wren not to eat a food, she won’t. She is not a fan of explosive diarrhea.
Your kitchen will now be known as the soul sucking black hole of death. This isn’t because you hate your kitchen or don’t like to cook, but Wren will not eat outside of your household for almost a year, and then it will only be a scoop of gluten free sorbet. No one in your house will eat out anymore, and that’s a good thing. However, it also means you’re cooking in, cleaning up, or cursing the soul sucking black hole of death.
Dennis will be diagnosed in September. You will cry. Even though it’s assumed you and Sammy have it and Wren has tested positive, the confirmation of Celiac in Dennis will deal you a blow that feels a little over the top added to everything else. It’s a little like having this invisible demon continue to assault you: first your kids, then you, then your husband. Fight back.
Look for help from holistic and alternative care people. Pretty much no one else, including the pediatric GI you will get in a very heated argument with which will eventually lead to you being called “difficult and uncooperative” knows much about Celiac. Your child’s pediatrician, some holistic chiropractors and Piper(more than anyone) will help you all along the way.
Go to Piper’s house ASAP. She has food. There are bags of it and it’s why you won’t starve after you look at the 23 foods Wren is reacting to. Piper is your food queen. Listen to her and consider buying her expensive birthday presents because of all she’s going to do to save your life this year.
Know that the silver lining is the awesomeness in people can shine in situations like this. Your dad and Wren’s Aunt Amy will be the first to get tested for Celiac because they take this seriously and know this is genetic. Your dad will send emails saying he's proud of you even when you feel like you're sinking. Aunt Amy will even have you make gluten-free cupcakes for Kainan’s party so Wren and Sammy can eat what everyone is having. Aunt Sherry will go gluten-free because it makes her feel better, and Wren will have another reason to look up to her as an amazing example. Judy will read everything on Celiac, will be able to recite information on the topic, and is one of the few people in your life who will only place their purse on top of the fridge when she comes to visit because she knows crumbs from her house might sneak in and she doesn’t want them on counters where we serve food. Nanny at 80-years-old will be able to walk through a store, read ingredient labels, and know what Wren can eat, what Dennis can eat, and will be able to explain why casein is not good for people with Celiac. Trust me, you’re about to find out how amazing, tedious, and awe-inspiring that task is. Aunt Leena will bring flowers when she comes to dinner now instead of food because she never shows up empty handed but understands our food rules. Wren will wear them in her hair until they die. Your life group from church will pray about which holistic care doctor your child should see, and two days later she will have improved so much that she doesn’t need to see either one before her originally scheduled appointment in June. Piper will introduce you to the diet that will finally get Wren's body back on track; she will stay up doing research like Wren is her child. You will love this woman.
You will frequently forget to thank these people and many more who will enable you to function this year. They understand. You will spend this year walking around looking like a hot mess with avocado stains on your shirt. You will start having insomnia again. However, you will be happy because everyone is alive. When you come out of your stupor, send some thank you cards and give some hugs.
Cross contamination: look it up. Yes, it’s bad, will mess with your everyday life and is one of the worst parts about this disease. It’s also the part most people don’t understand or take seriously. Cry a little and then prepare to live with it.
You will vacillate between wanting to be an advocate for the health and eating habits of kids and feeling so tired and stressed that you just want a bath and a nap and could care less about what other kids eat as long as yours are not eating any offending foods. This doesn’t make you crazy, but you’ll feel that way.
Overall, you are going to be taking much better care of the temple God gave you. You will be stronger as a mother, a wife, a Christian, hopefully in every area of your life. Don’t get cocky; you still have issues. This Celiac diagnosis can be a good thing though. It’s a good thing that looks very much like a bad thing, but the Lord’s hand is on everything. He is going to turn it around for your family and for His good. This is a lifetime condition, a marathon, not a sprint. You’re a bit of a sprinter because you like to lay down at the end and recover, but you don’t get to do that. There will be ups and downs. Keep going. Even a year later, there are problems, diarrhea, stomach aches, and confusion over what’s causing them. However, you don’t freak out every time Wren farts, slaps her own butt, and then screams “Oh, that’s stinky!” You know that whatever caused the can’t-stand-the-smell-of-my-own-fart fart will pass.
Good luck, hang in there, and get to May 2012 as soon as you can.